Change

There is a myth that people with autism cannot cope with change. This ‘catch all’ phrase is often used within services for people with autism, and sometimes this becomes an expectation that is created by the staff – a situation where ‘my attitude affects my behaviour which affects your attitude affecting your behaviour’.

One person that I supported had a weekend holiday booked to Paris. On the morning of their departure the staff supporting her came to the office and asked for her passport (normally kept safe with her paperwork). We searched and searched, but couldn’t find the passport. This meant telling the lady and consequently upsetting the planned routine of the holiday as she had come to expect it. We eventually found the passport, but not before the plans had been severely disrupted. The lady and her supporting staff member missed their train.

They managed to catch the next train, leaving them short of time, but just managed to get to the Channel Tunnel on time. At this point Customs decided to search the lady’s handbag.

They got to Paris without any further problems. That evening they decided to go for a walk and explore the surrounding area. They both became a little disorientated and lost their way back to the hotel. In fact it took them about an hour of walking in circles before they found their hotel.

The following day they decided to do what holiday makers do and see some sights. They began with the Eiffel Tower, getting the lift up to the second floor. However, just before the platform the lift became stuck. They were now in a small cramped, crowded and noisy area waiting to be rescued. It took over half an hour for the lift door to be opened, with all the occupants having to step up to get out. To add insult to injury they then had to get down the Eiffel Tower by the steps – all 674 back to the first level and then as the lady refused to get the lift back to the bottom, they had to walk the further 347 steps back to the ground.

The next day, in order to play things safely, the staff member and the lady decided to get a tour bus to see the rest of the Parisian sights. Being unused to the traffic of the city, this was an ambitious challenge. And in keeping with the rest of the weekend, this too bought with it another test for the lady. The bus had a collision with another vehicle and they had to wait for a second bus to take them back to their base.

Thankfully the final morning and travel was without major incident.

On their safe return to the residential home, the staff member filled me in on their hapless holiday. She adamantly stated she would not be available to take the lady away again. I sympathised (in best ad hoc supervision style) and questioned just how many incident reports she would need to complete.

The staff member looked at me incredulously and told me that there had been no incidents, the lady had been composed throughout all of the trials that she had faced and other than natural irritation she had kept her cool and accepted each ordeal without any of the agitation that we have had to deal with on a daily basis.

I asked her why then was she so resolute in not supporting the lady on another holiday, when she had so obviously coped extraordinarily well with all of the change. The staff member agreed, she had managed well, but what she could not handle was the repetitive communication that she had had to continually listen to, with no chance of abating that had occurred once the lady realised that the maid in the hotel had been into her room and slightly, just slightly, moved the position of her flannel on the sink….

 

Seeking an effect

Eedy loves to shock. If you’ve read the other blogs, you’ll realise that one of his favourite things is to cause people to exclaim, because in those exclamations there are physical affects; a person’s voice rises; their body language changes; their facial expression alters, Eedy’s success rate is based on the level of ‘flustered’ he can evoke. All of which brings great delight to Eedy.

He’d always got a good response from his grandfather, a stern, strict, unbending man who had very little patience and no compassion for Eedy’s autism. Eedy’s favourite would be to visit him, look him up and down and ask him, ‘Are you going to die soon?’ It guaranteed success every time!

One Christmas Eedy was home with us and my mother-in-law was busy preparing the roast dinner in the kitchen. Initially Eedy just stood, rocking from side to side, watching her with interest.

“Have you ever had sex?” he asked. Mum-in-law didn’t miss a beat, “At least 3 times, Eedy, I’ve got 3 children!”

“I’ve never had sex!” he said.

“No, I don’t suppose you have. It’s not all it’s cracked up to be”

Eddy stood watching her for a while longer and then left the room.

 

…but words will never hurt you…

Eedy has always been great at beating the system. Being in care from a young age, he has had years of experience in working out how his care teams tick, and what will aggravate them most.

He’s learned that when he has a female staff team there will always be some of the team that cannot cope with hearing the ‘C’ word. No other expletive holds so much power. Four letters of total immediate effectiveness. So, with that in mind he’d regularly drop the ‘C’ bomb to get the reward of cringing staff, reprimands and the general benefit of another’s discomfort. Not forgetting his on going enjoyment from that change of tone emitted from a person shocked!

In his early teens he found himself in a situation where he was only allocated male staff. And dropping the ‘C’ bomb lost some of its power. Nonplussed Eedy decided to find an alternative.

The first I heard of it was a frantic call from his social worker. “All the staff are refusing to work with Eedy!” I tentatively asked why, how could a whole staff team refuse to work with my boy? “It’s because he’s calling his staff ‘paedophiles’.”

Eedy had found the one word that could do most damage. His staff were all local to the area in which Eedy lived and could not cope with people in their community hearing his new favoured phrase ‘You’re an effing, jeffing …’ etc. Fear that locals would put 2 and 2 together and make 5 was a real worry and that they could be tarred with the ‘no smoke without fire’ brush.

The social worker asked for advice. She suggested formally writing to Eedy (on headed notepaper, no less) and firmly telling him that this was unacceptable. Eedy can be a bit of a jobs-worth at times and authority occasionally would hold some power, so I agreed it was worth a try and she sent me a copy of the letter before it was sent.

Throughout the whole letter it referred to ‘a bad word you are using’ and ‘calling your staff a word that’s not nice’ never once was it spelt out which of his repertoire was the cause for concern. I pointed out that perhaps this was giving the word more power. I also pointed out that because of his autism, Eedy is very literal. He’s not going to work out the inferred word or the inferred threats that his staff wouldn’t want to work with him.

She changed the content of the letter. But not before she had told me that she was very unhappy to do so as she didn’t want to put the ‘P’ word on paper.

Eedy got the letter, ripped it up and threw the paper out of the window. It didn’t work. His staff did keep working with him and to this day he is gifted in the use of phrases and words aimed to provoke shock and gain a reaction.

Off target…

At one point when Eedy was in his early teens he was assessed as needing male staff only. This had come out of the blue, so I questioned it with his then care provider. “It’s all legit,” I was told, “it’s from his risk assessment”. I further asked if his aggressive behaviour had increased without my knowledge. It hadn’t but I was firmly informed that Eedy had a history of ‘targeting female staff’, and the management of this was to ensure he only had male staff supporting him from now on.

Funnily enough, I was still able to have Eedy home. I was still able to go out with him. I was still able to drive a car with him as the single passenger. He could still be on his own with his little sister. And even funnier… we didn’t feel there was any threat.

So Eedy’s staff team became male. He came home one weekend, shortly after the changes, and I asked him if what he knew about it all. “I target females,” he told me. I asked him if he knew what that meant.

“Oh yes”, he replied confidently “It’s when I run at the women to get them to make those nice high pitched squealing noises like Nanny does!”

Me: …..

Moving stairs and meltdowns

On occasion Eedy would be calm during shopping trips, and on these days, The Adults could too, begin to relax and gain a sense of normality. My sister and I found that we could actually communicate with each other, rather than the more usual 1:1 all consuming job of ‘keeping whichever child in order’.

On one such trip we ended up in Boots. This was before the era of digital photography and films from cameras needed to be developed. I explained to my sister that I was going to quickly run up the escalator to drop a film in. Both Mogs and Eedy said they wanted to come with me. The toys were also upstairs and they were both gifted at seeking out the opportunity for their aunty to buy them new toys.

As both had been particularly well behaved on this trip my guard was down. My sister and I were always ridiculously optimistic – one good day would be processed as a hopeful turn of events and the positive anticipation that this would be the way things would go.

As it had been one of these good days, I said I’d take them both up with me. So, with Eedy in front and Mogs bringing up the rear, we stepped onto the elevator. Immediately the previous calm was shattered. Mogs was too close to Eedy, Eedy was too excited, too closed in, too sensory overloaded. He showed his change in mood by beginning to push and shove his sister. I tried to keep order. Keeping them together whilst keeping them apart. Eedy got one last shove in and Mogs went flying. Her little toddler body tipped backwards and she somersaulted down a couple of steps. Instinctively I grabbed for her. You know that funny feeling where everything that happens in a split second seems also as if time has stood still? It was one of those.

I caught hold of Mogs by the arm, wrenching her back up the escalator. By this time she was screaming, one of those piercing screams that could either be pain or fear. I held her close to me patting her arm and feeling for injuries. It occurred to me that my grabbing her could have injured her and I can remember clearly hoping I’d not dislocated her arm.

In the midst of this I still had to keep close supervision of Eedy. Mogs didn’t appear hurt. Just sobbing with shock. I hugged her into me and reached out for Eedy. Thankfully he was still close.

Grinning from ear to ear, happy, excited, and totally overjoyed Eedy looked up at me, excited hand wringing showed he was thrilled with the situation. His clear communication left me in no doubt…

“Make Moggy do it again! Make Moggy do it again!”

A totally successful trip for Eedy. One he has loved to recount from that day on!

A hyperactive protest

When Eedy was young, shopping was his least favourite activity. Usually his mum would round up a willing second adult and in true one to one fashion, Mogs would be allocated to one adult and Eedy to the other. It would be a squirmy, wriggly type of trip. Eedy would treat the many grabs and holds as a challenge to win, success rated by his ingenious methods of writhing out of the holds and running as quickly as he could towards whatever opportunity presented itself first.

He had a few favourite ways of alleviating the boredom he so obviously felt. And if he succeeded in a triumphant release from ‘The Adult’ he had his escape route planned to perfection. In no particular order, these favourite escapades were:

  • Scooting towards the nearest door in a shop marked ‘staff only’ and heading inside without hesitation. Leaving The Adult to run behind, grasping at his jumper, his trousers, his arm… anything that could stop the rapid path of hyperactivity whilst issuing apologetic words and glances in response to the disparaging looks and scaving comments of the shop staff
  • Bolting towards the checkout and with immense superhuman reach (way beyond the natural scope that a child below the age of ten could possibly have) pressing every possible button on the till. This particular escapade would again leave The Adult red faced and apologetic in the midst of judgemental tutting, and scornful comments. All said heatedly to the piercing tones, bleeds and alarms from said till.
  • Scarpering at full speed towards the nearest elevator – a successful run was that which resulted in Eedy streaking through the lift door just as it was shutting, leaving The Adult aghast as the doors shut. After a harassed sprint to the next floor for The Adult, Eedy would be waiting just outside the lift, ready to run amok around the shop with The Adult in hot pursuit, flustered, harried and by this time pretty damn angry. (The anger of The Adult would directly correspond to the level of excitement Eedy felt that was shown by a wild demonic smile of victory and wringing hands)

Perhaps in Eedy’s repertoire, his greatest moment came in a music shop. He had been particularly calm on this occasion, so the iron cast grip had been somewhat relaxed. All had gone well for a couple of shopping trips and The Adults were beginning to optimistically believe that Eedy was maturing from his anti-shopping campaign. Eedy, never one to let an opportunity go by, seized the moment. He twisted out of the hold and ran towards a gentleman in a wheelchair, pushing it forward with all of his might. The guy in the chair must have felt the sudden surge, and on turning around could not see Eedy as his height was below that of the backrest. He shoved again and all that could be seen was the horror on the guy’s face as he turned back to face the front and the penny dropped – his chair was heading straight for the shop steps to the basement. It was like a slow motion movie. Eedy pushing with all of his might, The Adult leaping forward to intercept him and the guy grabbing at the wheels of his chair to halt the forward momentum.

It all came together at the eleventh hour. Eedy was grabbed. The wheelchair was halted within a hair breath of the steps. Situation aborted (other than some very unhappy adults).

This was a full on win of a situation for Eedy. No amount of chastising could wipe the grin off his face and the excitement as he jumped up and down, wringing his hands together in glee. The victorious phrase of ‘Find the wheelchair man’ became a regular refrain for months after.

He still loves to be told of the story now. Fortunately he has matured from this stage of his life, but the stories, recounting each and every misdemeanour still bring him great delight and laughter.

Empathy

Can people who have autism show empathy? There are lots of studies into autism differences in imagination, problems with understanding, comprehension and seeing things from another’s point of view.I supported a man in his twenties in a residential care home; he lived alongside 11 other people. The man was unable to communicate verbally – his communication was limited to one signing gesture – rapidly tapping his hand to his chin to indicate ‘yes’ ‘no’ and ‘now’; facial expressions of smiles and grimaces and rocking from side to side (the speed of which would indicate calm or agitated). This man was known for his impatience. He would become uptight if things were not in the order he required, this restlessness often over-spilling into frantic pushing into (or through) other people.

One of the ladies in the home would talk incessantly about this man, yet her chatter never appeared to stress him. She always wanted to know where he was, what he was doing and if they could do things together. The man showed little emotion towards her in return; just appearing to tolerate the constant noise of her nattering.

Over the period of a year the lady’s health rapidly deteriorated. Although she was only in her twenties she lost the skills she had and eventually even her talking stopped. She spent more time in bed, unable to talk, walk and communicate – other than the messages her eyes sent to those who knew her well. It was noted that the man would visit her room, barging in, unaware of the concept of privacy, just looking at her, whilst rocking in a calm manner from side to side.

Eventually the lady fell asleep. Her passing was peaceful.

We agreed it was best that the other people living in the home went out, so that her family could spend some final, undisturbed time with her. As the staff team sorted out the impromptu day-trip, I called the man to one side. Disregarding the assumptions of his disability I discussed with him what had happened to his friend, using straight language as to enable as much understanding as possible. I asked him if he would like to go to her room to say goodbye in person. He tapped his hand to his chin and impatiently walked to the door to get to the homes’ minibus. I figured perhaps the trip out was more important to him.

The following morning as we sat down for breakfast, the man showed no signs of grief. He seemed the same as ever. He impatiently grabbed at his cup of tea and then pushed past the person next to him to reach for the teapot. He reached further over and grabbed my cup. I was about to intervene, thinking he was going to drink the dregs left in the bottom, but something stopped me. I watched with amazement as he picked up my cup, filled both my cup and his own with tea, and then pushed the full cup back in front of me. He’d poured me a drink.

I smiled, said thank you and drank the sweetest cup of tea ever.

I have always remembered this funny, impatient and pushy man with fondness. It was only the once that I witnessed him obviously doing something for someone else and I believe this was his way of saying ‘thank you’ for treating him with respect in a difficult time. Outwardly he never showed any signs of bereavement, but in his own way he gave a clear message of gratitude.

#Autismawarenessmonth 

Police checks

Just before Eedy was eleven years old he was being ‘looked after’ by the state. His father didn’t have any contact and I was his only family link/visit. His sister lived with me, indeed, it was okay for him to live with me, only I’d said I couldn’t cope.

I was grieving my sister; he was grieving his mother.

His sister didn’t display aggression …and didn’t need 24-hour attention. The cracks were showing in my marriage, then-hubby and Eedy hated each other and both presented ‘challenging behaviour’ in different ways (!).

I turned to the social care system for help. I’d been an aunty for the last 10 years.

But not a mother.

I couldn’t cope. I needed to continue with my full time job as a residential care home manager in order to pay the mortgage. Actually, I’d not asked for my life to change, so I didn’t want to give my career up. I’d already moved from one employment to another in order to be closer to home and have less shift work, but Eedy’s behaviour made it untenable to work full time and be on the ball.

The social care system did provide some support. I was allocated one weekend a fortnight’s respite for Eedy. This was at a children’s respite service. All was good there. Eedy was safe and I had some space. Eventually though, it wasn’t enough.

All I could see for the rest of my life was our fortnightly break. The marriage was getting worse, more volatile, more irretrievable. I turned again to the children’s service. I was told that due to the ‘priority’ they would be able to offer me the use of an ‘intervention team’ who would look after Eedy from school, through to around 7pm. The thinking being that he would come home and go to bed (like that happened – ever!) I refused. All I could see was this continuing until the funding was withdrawn or until he showed the slightest improvement in his behaviour.

I was told there was no other option. I was pushed into taking Eedy to the respite centre and phoning social services saying he couldn’t come home on the Monday.

Where I was right then I really had no choice.

Eedy stayed at the respite service for 4 weeks (during this time described as a bed-blocker) as no other children could go for respite due to safety reasons because of his behaviour. I was able to visit, able to attend meetings, but as he was no longer living with me I no longer had any rights other than that of a ‘concerned relative’. I didn’t have parental responsibility. His mother had cited in her will that I should have guardianship – but this was not recognised in a court of law. Fast forward to Eedy’s going into ‘the system’, foster care, then back to respite care, then finally into residential care and I was told he could no longer come to stay (but for some reason he could visit) …because I had not been police checked. It kept being mentioned, we were told every person who was likely to turn up at our home when Eedy was there would also need a police check. We were never given the forms.

We didn’t have him overnight again until he was 20.

Aftermath

cealIn the weeks after my sister’s death social services were sadly unavailable. It was the Easter holidays, so could I wait and someone would get back to me? I found out afterwards that things would have been different had I cared for the kids at their family home (a housing association house). This would have flagged up an ‘at risk’ priority as the kids would be homeless as the tenant holder (my sister) had died. Empathy at it’s best! Because I took the kids to my house, they were deemed ‘safe’ and therefore not a ‘priority’. Work that one out?

I don’t really remember much about this time. I was pretty spaced out on grief and wine – the only thing that could get me to sleep. The newspapers kept calling, and a part of me felt that was so, so right. It was, to me the biggest news ever, so no wonder the media were interested. I opened my door one morning and experienced the life of the famous – that fluffy boom thing in my face and a reporter asking me to comment. I didn’t. But I took the decision to talk to a local reporter. I don’t know what he said that was different, but my instinct was correct. I told the reporter from the Exeter Express and Echo I would only talk about my sister, not her treatment or her family life. He reported without variation other than the headline ‘Local woman dies from flesh eating disease’ and explained that the local paper was affiliated to some of the nationals, so a three page spread in the local rag, and a column on page 3 in the Daily Mirror. My sister would have been proud! Fitting for the immense grief I was feeling.

It was odd really, people’s interpretations. On the day of the newspaper reports I was shopping in my local precinct and felt an odd feeling of ‘that’s the right thing’ when I saw that she had made the billboards outside a couple of newsagents. I got back home and the answer phone was flashing like mad. They had used the photo they had from a trip to Lapland, financed by the local charity ‘Dream-A-Way’, so anonymity was futile. Countless calls from Mogs’ headmistress telling me to call her and warning me of the media interest. I spoke to her, but could tell that she was completely baffled when I told her I wasn’t going to walk a different way home as so to shield Mogs – I was going to take her home and read the paper reports to both her and her brother. We agreed to disagree.

That evening Mogs, Eedy and I went through the newspapers and they laughed at their photos. In the midst of the heartache we smiled, I cried, and the kids reminisced.

Bereavement

I’d always been close to my sister.

When her marriage broke up, leaving her as a single parent to two children; my nephew (aka Eedy) aged 3 with learning disabilities, autism, adhd and microcephaly and my niece (aka Mogs) of eighteen months – also with microcephaly (and the diagnosis of autism yet to come.) I was there pretty often, playing the role of the second adult in their life. Helping at weekends with the parenting and hopefully sharing some of the strain. She coped really well (although she would have described it differently), she didn’t get much of a social life, and couldn’t even think about paid employment, but she resourcefully spent her time studying for an open university degree in psychology, involved in the Guilliam-Barrie support network and co-running the local adhd support group. She was the extrovert of the pair of us – thinking nothing of talking her cause and expertise on local radio and national breakfast TV – citing the perils of living with and bringing up a child with autism and extreme adhd.

By the time the kids were 8 and 10 she was 4 years into her degree work and had her first serious relationship since her marriage breakup. She’d had health problems in the past. Terrible migraines that her GP had misdiagnosed as stress and prescribing anti-depressants that she stopped taking within a week because they zapped her energy– her optician eventually realised these were caused by a detached retina – most probable cause the toy box her son had chucked down the stairs which had landed on her head.

But nothing compared to her final illness. She began to complain of a pain in her left shoulder blade on Tuesday, stating that it was horrific and beyond words. The doctor and NHS Direct gave advice to take painkillers, heat compresses, and don’t over strain. By Wednesday she wasn’t sleeping due to the pain and called me to pick up her daughter from school, as she felt unsafe to drive. More calls to medics and the same advice. By Thursday my then-husband was taxi-ing the kids and by Friday he went back to the house after the school run to take her (with or without permission) to the hospital. They gave her morphine for the pain and admitted her, believing it to be a pulled muscle or maybe a blood clot.

I picked up the kids from school; we visited on Friday evening and said we’d be back the following afternoon.

Midday on Saturday, April 15 2000, I got a call from someone at work; the hospital had rung there trying to get hold of me. I needed to phone them back.

One of those calls that is never forgotten. The fear was due to what they wouldn’t say, not what they would. Just come. Don’t bring the children.

Just come.

Oddly all I could think about was remembering to turn the grill off. I was cooking fish fingers at the time. I’ve never bought, cooked or eaten them since. They are off the menu. Forever.

I knew, as I made arrangements for someone to have the kids what I was going to face. I even said this as I dropped the kids off. And was told I was over reacting. “Don’t be so silly”.

The hospital staff were sympathetic, professional, thoughtful and kind. My sister had died, aged 34 of necrotising fasciitis (aka ‘the flesh eating disease’). She’d not been ill before Tuesday, died on Saturday under anaesthetic in theatre.

They had made plans to keep her in a coma for weeks had she survived to give her body a chance to recover. But in theatre she’d died. The death certificate stating septicaemia.

I called our parents, they came to the hospital. Later we all went to our separate homes. I picked up the kids and took them back to my house. And told them. Told two children aged 8 and 10 their mother was dead. Their father had left 7 years before and both had autism. Grief is different for autism. They just accused me of joking, asked ‘do we live here now?’ and then went to bed.